Why we need a long term care revolution

It is time to take long term care out of the shadows and promote a public debate about the care and support we aspire to in later life rather than accepting the current institutional models which offer so little choice and control for older citizens. The publication of Key to Care@PaulBurstow supported by @LGiUis a timely reminder of the challenges confronting the care sector and I welcome the mention of the need for service design and investing in technology.

I am one of the much maligned baby boomers being blamed by politicians and the media for not being responsible in planning for later life. The obvious question is what exactly I should be planning for – being warehoused in an institution which may strip me of my dignity, pride and independence?

A blueprint for the redesign of long term care does not yet exist and we lack an overarching vision about how we want our care and support in later life to be provided beyond the institutional model. What are the levers of influence when social care is so complex and fragmented?

I believe our biggest challenge is bringing together all the sectors with an interest in improving the quality of later life for older citizens. As an example this includes: NHS health and care sectors, care providers, housing associations, emergency services, the wider social sector, Joseph Rowntree Foundation, Kings Fund and many other think tanks, Care Quality Commission, Telecare providers, Independent Age, International Longevity Centre , Age UK, CarersUK, Design Council, Innovate UK, Nesta, Big Lottery and Nominet Trust who fund social technology projects, Centre for Ageing, universities, technology innovators, different Government Depts: Health, Communities and Local Government, Work and Pensions, Cabinet Office, Business, Innovation & Skills, Innovation Labs and Impact Labs across the UK. (I should add that this is only a small sample of the organisations involved in this area!)

I wonder if all of these bodies have ever sat down together to explore more effective collaborations and how to avoid duplication of effort and resources in basically tackling the same problems?

An honourable mention for how technologies from other sectors and industries could help address the seemingly intractable problems about supporting citizens in later life.

There seems to be a gulf between thinking and doing as organisations are unable to turn ideas into actions. Is this because there are so many stakeholders with their own perspectives and priorities sometimes struggling to survive in a competitive funding environment? .

Last week I launched my Long Term Care Revolution Provocation Paper commissioned by Innovate UK to provide an independent perspective about the challenges of developing radically different models of care which will meet the needs and aspirations of older citizens in later life.

With many thanks to Paul Taylor for developing the presentation

@shirleyayres excellent summary of what needs to be done. . What I learnt: How fragmented the world of long term care is. Thanks for sharing

If long term care is not fit for purpose how can we revolutionise the system or do we accept that the system is not the best but it is slowly changing and we need to give it time?

The “Ageing” sector is a complex multi million pound industry involving hundreds of organisations and millions of potential beneficiaries. From the @BigLotteryFund £82 million Ageing Better investment to the £50 million being spent creating the new Centre for Ageing Better why has there been so much reluctance to embrace new models of care for older citizens? There are a proliferation of partnerships and alliances exploring this agenda and how to embed social innovation in long term care. It is unclear how they are collaborating to provide a UK overview. Critical messages get lost in the plethora of reports and which often appear to be covering similar areas of concern such as isolation, loneliness. digital participation and the value of older citizens.

The reality is that person centred care will translate from words into everyday reality when we focus on the older citizen and are able to answer the simple questions “what will improve the quality of your life?” and “what care would you like to support you to live a fulfilling life?”

Our ageing population represent a victory for better nutrition, better housing, and the welfare state. People in later life offer wisdom, experience, perspective and a wide range of skill sets and capacities. Why are we not utilising the wealth of knowledge and experience of older people to develop and deliver community services that meet their needs?

We need a cultural mindshift which challenges the idea of older citizens being “objects of charity” rather than active consumers

How do we change the narrative and think about a future where people look forward to later life with a wide range of choices to live a fulfilling life which is not dependent on health, locality or relationships?

Strangely people aged sixty plus are not one homogeneous group, we are as varied as individuals in any other sector of the population and our different life experiences inform our perspectives as consumers. Older people may have similar needs physically but these do not erase life experiences, preferences and orientations. Older people is not an identity but a statistical category

The budget deficit in health and care seems to have become a race to cut costs and shift responsibilities and places little value on the quality of life of the citizen requiring long term care. Organisations with a focus on systems and processes are still negotiating block contracts for care services. Services are not being tailored to meet the personal needs, hopes and aspirations of older citizens. There appears to be a focus on medicalising later life care which ignores the health risks associated with loneliness and social exclusion amongst older citizens.

Our society has advanced in all aspects of life socially, medically, economically, technologically, environmentally. These advances have substantially redefined how we live our lives on a daily basis, how we travel (space, air, sea and land), how we communicate, how we work, how we manage our finances, how and what we buy, how we experience leisure and entertainment, and how we educate ourselves. Yet the institutional principles which form the basis of long term care provision remains completely unaffected by such changes and have failed to develop in-step with these advances.

How do we make organisations culturally ready for moving from institutional thinking to person centred care which recognises how the adoption of digital technology can enhance the care and support available within communities? Digital does not have to mean no human contact. What it can do is free up the time for more face to face contact.

A gentle reminder that baby boomers expectations and aspirations have been shaped by:

1953 Francis Crick and James Watson discovering the structure of DNA.

1963 Martin Luther King Jr. delivers his historic “I Have a Dream” speech

1993 work on the Human Genome Project started

1969 Neil Armstrong becomes the first man to set foot on the moon

1971 Launch of the Open University

1973 Pink Floyd’s The Dark Side of the Moon is released

1998 Google founded

1998 Launch of Apple iMac

2001 Launch of Wikipedia and the first Apple iPod..

2004 Facebook is founded

2006 Twitter was created

A serious question has to be asked about why the NHS and Social Care sectors who currently commission the majority of long term care have been so slow to develop a culture which promotes innovation. Market shaping exercises seem to assume the ‘status quo’ will continue indefinitely which is confirmed by the number of care providers now building new and larger care homes.

It is worth mentioning that my @nominettrustProvocation Paper published in 2013 highlighted how online innovations can enhance social care. Disappointingly I have seen very little mention of this in the Better Care Fund plans and the Care Act implementation. Frankly I am astounded at the disconnect between what policy makers and care providers think is required in later life and how I see my my future which includes:

Mobility is often a challenge for older citizens. Apart from decent and affordable public transport how could driverless cars keep people connected with their family, friends and the community?

Living choice for older citizens are influenced by standards, regulations, the design of new housing and lifetime homes. What are the options for retrofitting of existing housing stock; shared lives and co-housing. How can we support inclusive communities and neighbourhoods through urban design and planning?Where is the thinking across social care, health and housing about the importance of smart technology enabled homes

There are tough and uncomfortable questions to be discussed to inform the debate about how we can all look forward to a future without fear of being abandoned to a market where vital care and support is determined by our income and locality rather than our needs and personal preferences. We have to address the potential shortfall in both formal and informal carers in the future with more people living on their own who do not have families to support them.

I want a clear vision for the future which offers a coordinated system with many different life choices for citizens in later life. This is not just the responsibility of one sector it needs to engage each and every one of us at local, national and UK wide levels in a public debate about our hopes and aspirations for care in later life.

A substantial number of reports, research and articles informed the development of the Provocation Paper and I will be providing a follow up post which details the background reading.

The new Radio 4 series The Invisible Age is looking at the issue of sixty plus age groups encompassing several generations and how we as a society regard older citizens. The recent You and Yours programme asked the question ‘do people treat you differently once you’re over 60’. I was invited to discuss with Winifred Robinson our attitudes to ageing, whether people are ignoring ageing issues and why we need a long term care revolution.

The most powerful need we humans have is to be connected and to remain connected. Social media provides unrivalled opportunities for all of us to contribute to the long term care debate. I would love you to add thoughts, comments and share your dreams about the choices you would like in later life!